Home Sweet Home
The house is a little ranch in a quiet neighborhood. Aaron and Jack each have their own room which is decorated with their favorite things. We remodeled the back half of the garage into a room where the staff could sleep and maintain an office. Aaron and Jack need a staff person with them at all times. I’ll talk more about the staff in another post.
The guys have a HUD rent subsidy so they only have to pay one third of their income in rent. The house is owned by a non-profit agency that does the maintenance. Thanks to Aaron’s Uncle Steve, we learned about HUD and were the first people in Ohio to access this source of funds. Some day I’ll tell you all the details about the craziness of applying, it involved five people using speed-dial and having to call between 10:00 AM and 10:30 on a specific day to secure the limited vouchers. It was a group effort, and when we got the application we felt like we had won the lottery. It takes parents and other caregivers a lot of effort to keep all the funding balls in the air, but with some creativity it can work.
Aaron and Jack have lived together for over 11 years. Jack has Down syndrome and is in his 50s and Aaron is 35 and has the label of autism. They get along great. They just seem to know what the other person wants or needs. Jack will pick up stuff if Aaron drops it, and Aaron just seems to know when Jack wants to be alone with his videos. It is pretty remarkable that even without verbal language, they just seem to have an understanding, their own system of communication. They don’t go in each other’s rooms–even if the door is open. They know their own chair and place at the kitchen table and they each have a job around the house. Jack loves to choose and pass out different seasonal placemats (this week’s have watermelons). Aaron’s job is to clear the coffee table in the living room and water the plants.
Aaron’s makes choices
Aaron’s favorite things to do are to listen to music, go swimming, go anywhere–he likes cars, buses, trains, planes… if it moves, Aaron likes it. We bring Aaron to our house every weekend so we can be a part of his life, and to give the staff a break.
Neighborhood Welcome
When Aaron and Jack were first moving into the house, there was a huge lawsuit and neighbors across town were claiming that having people with disabilities would lower property values. Fortunately, Aaron and Jack’s neighbors have been wonderful. We planned a picnic last year for all of the people in Aaron’s day program and the family next door not only came to the party, they brought the potato salad and joined in the games. They have helped clear snow and would help in any emergency. We’ve watched the kids next door grow up and feel blessed to have them in our lives.
Update:
In November it will be two years ago since Aaron moved into a new home so he could live closer to my husband and myself. Aaron got a new residential company and new staff.
Jack stayed and got a new roommate though he did come to visit. When the residential company went bankrupt, his loving staff stayed with him for a while, but then moved on. The company that owned the house decided to sell it. So, Jack lost Aaron, his staff, his house and his security. Is it any surprise Jack’s health has suffered.
Next week, Aaron is going to try and visit Jack. There will always be a place for Jack in our hearts. He is a quiet, gentle man. There is no doubt, he and Aaron shared an important part of their lives. There is no doubt they loved each other and looked out for each other–just like a family.
Currently we are looking for a new roommate for Aaron. Jack lives in another county now, so he can’t join us. We meet a new man next week. Will he be someone who will be friends with Aaron. Can this new person be like Jack.
More later.
Keep Climbing: Onward and Upward
Mary
Thanks Mary and Char. I’ll goggle it and see what I find.
Char what part of the country were and or are you teaching in. I have never seen facilitated communication done. I suspect the zombies here in the Lancaster/Palmdale CA area haven’t even considered such a concept.
Skallagrigg? Never heard of it. Is it in PDF format? I’m intrique that someone even wrote a novel about nonverbal communication. Thanks for sharing Char.
My copy says Penquin Books and there is a New York address. Copyright is 1987 by William Horwood. Highly recommended but must tell you, it is a complex story, but one you’ll never forget.
What you have described fits so well with my experiences as a spec. ed. teacher at the elementary level, mostly with kids who were nonverbal. They really did have a way of communicating with each other that I did not understand, and they were amazingly tuned in to my moods and thoughts. Once we started using facilitated communication, they tried to explain it to me, but still I didn’t really get it. I love to hear that research is being done in an attempt to help all of us develop a better understanding and appreciation of people with autism, Down syndrome and related conditions. Let the myths fade away as we open our eyes and hearts to new ways of thinking! Have you ever read the book “Skallagrigg?” Great novel about nonverbal communication.
Anne Donnellan gave me the book Skallagrigg. It was AMAZING!
Char are you still teaching? There is a new book coming out on FC by Sally Young. Aaron and I wrote a chapter. You are right. Let the myths fade away.
God haven’t seen my little friend in over six years. I strongly suspect that everything that me and Maria did to help herself have been largely eradicated. It just simply wasn’t what her paperwork said she should be able to do.So it simply just didn’t exist. Also I was the only one she would open up to. That made for some jealousy with the paid female aides. I was just a volunteer after all.
I hope I’m dead wrong but I don’t think so. Also her family wasn’t keen on her improving herself either. Go figure because I can’t.
Thanks for the compliment though it is appreciated.
Have a great day.
Gary, you have to keep believing that little Maria is still making progress and moving toward a happy life. Bet she still remembers you and how you touched her life.
You’re right it is bogus. I worked with a few autistic. I was actually better with nonverbals than verbals. Go figure. One of the most amazing and very much mislabeled was Maria.I can’t remember how to spell her last name. Anyway sha at first didn’t do anything but sit and rock. So I started just sitting with her and over the course of a couple of years she not only started coming out of her shell she did many amazing things. Such as made sure I always took my white cane when I went outside the classroom, informed me when someone needed help or took off their shoes and socks(she got room she never liked her shoes and sock on). She even headbutted me whenever she felt I was pushing myself too hard. I very prone to do that if I think something is important.
Now bear in mind she was not only autistic but deaf and nobody taught her anything not even how to use a spoon at circa 19 years old. Actually I did that. But I think it was the bonding that help her not the isolation.
Sounds like you made a difference in her life. Good luck to you Gary.
Mary you might find this interesting. Apparently the human heart emits a EM field that has been detected 8 feet away. This EM field pulses exactly like the heart pulse that you feel when you listen or feel it beating in your chest. The truly amazing thing is that the heart’s variable rhythm like brain rhythms shows the emotional state of the person. Thus Aaron and Jack might be communicating via the heart’s EM field. I found this at the Institute of HeartMath. They have a website that shows the amazing research that they have been doing in this new branch of cardiology.
Fascinating. Thanks Gary for sharing this information. I’ve never heard of this before, but it is giving me all kinds of ideas. They always say even people in comas can hear and feel the presence of a person in a room. That is one of the reasons I always have fits when I hear, “People with autism need to be by themselves.” I just don’t think it is true. Sure we all like to be by ourselves sometimes, but I know Aaron likes to have human contact and be in the room with others.
I will check out the website you gave, and was just reminded of the music by Gary Lamb. It is based on the rhythm of the heartbeat. His CDs are often used by teachers to calm students and babies.
It’s good to know there are people who care.
Mary, it makes me sick that you had to deal with lawsuits over Aaron’s home. I know all you go through on a daily basis, and it seems the frustrations never end. Hopefully one day people will be more accepting. Aaron is lucky to have you!
We are lucky to have Aaron. Right now we are off to a fabulous dentist who’s staff is so incredible they even get Aaron to floss his teeth. There are many wonderful and caring professionals out there. We just need to get more.
Don’t know if you remember the Stettinius Street lawsuits. They were ugly. We attended City Hall many times for that one and the ones in Hamilton. The key is “natural proportion.” Aaron and his housemate with one full time staff person can blend into the neighborhood. That makes all the difference. If it was a large group home with 18 people, I’d be upset too. We live in homes, not institutions. We still had to go to the Board and have an appeal this year to keep just two people. They were fighting for 4. But the Board saw our concerns and there were other parents on the board so they knew the issues. Thanks for your encouragement.